snuggle time

 And from the other direction....

Another hospital visit

Eve has had a rough couple of days. This is our third day in the hospital. She's had some very bad constipation and we've been trying to fix it with medication and suppositories.  She was making some gaggy faces Thursday night and I touched base with Hospice. We gave extra meds for constipation. At 4am, I woke up to her violently vomiting. It was horrible. She couldn't stop. So, we called hospice and the nurse came over. It's now a bit of a blur, but we tried zofran for nausea and hard core pain meds that were puked up. We tried a medicated suppository. The nurse heard no bowel signs, so she called the ambulance so Eve could be tested for a bowel obstruction.  We arrived at the pediatric ER at Baystate at about 9:30am on Friday. By now she had horrible junky breathing and a fever, so they did a chest X-ray and an abdominal X-ray. They did blood work (not terribly problematic) and a urinanalysis (normal).  The abdominal X-ray showed her packed with poop, so the nurse gave her an enema. Oh. My. God. The biggest poop I've ever seen.  However, she was still feverish and her breathing was rough.  So, they admitted her. She vomited again when she arrived at her room.  At this point she had no meds other than some Motrin, so I'm sure she was hurting bad. They were able to start an IV (she's a hard stick and had foiled at least 4 previous attempts in ER and new room) and gave her Valium and fluids through the IV. Saturday morning they ordered another set of X-rays. The chest X-ray showed no sign of pneumonia which was great. The abdominal X-ray showed she still had lots of poo. Enema #2 was also successful. They also slowly started putting Pedialyte in her j tube, which she tolerated. Then the started her meds through her g tube, which she also tolerated. Then they put formula in the j at the normal rate. That, too, has been tolerated. The GI suggested a mixture of her previous fiber containing formula and a non fiber formula.  Maybe the fiber had been compounding the problem. So, though she had a pain episode last night at 3am, she's doing much better. She looks more alert and relaxed. I think getting bowel relief and getting back on her regular meds has given significant relief. Her breathing sounds better, but she's still wheezy. The doctors are satisfied she's back to baseline and are sending her home. Ambulance is arranged for 1pm.

This was a rough and scary experience.  It's times like this that make me extra upset at the amount of suffering this child has to endure. I don't know how much time we have left with her, but why does it have to be so horrible for her? Why can't we have a quiet and peaceful end?

On a more positive note, we face timed with Jim and Seamus this morning and she smiled and laughed pretty hard. Of course that made her wheeze badly, so I asked Jim and Seamus to stop being silly which made her laugh harder. She was definitely not this responsive in the past two days. So, wish us luck.

Eve's friends

Eve is hanging in there.  We're managing her pain and digestive system issues as best we can.  They're moving targets.  But she's had a pretty good week.  And she's had some visits from school friends that she loves very much.  Two of her dearest friends came by on Wednesday and lifted her spirits.  It was amazing.  She had just had her long day at summer camp, so didn't have her usual nap. I expected her to be a little distant.  But that was not the case.  She focused on them and at one point laughed so hard in a way I haven't seen in months.  We are so lucky to have such amazing kids in her life.

Seamus gems

This morning we had an interesting conversation.

Seamus: "Bumble bees taste like bee pee."
Me:"When did you eat a bumble bee?"
Seamus: "None-day."
I can't make this up, people.

Oh, and here's a shot of him chillin' out on his daily commute.  As one friend said, not a care in the world until he gets the "call."

Happy birthday, Seamus!

Seamus is 4 years old!  Where has the time gone??
Jim's brother, Scott, came for the weekend.  The kids just adored having him here. 

Happy Birthday, Eve!

I can't believe our baby was born 10 years ago.  Truly incredible. 

Seamus loves Eve

Seamus was asking me about why boys are flat chested and women have breasts.  He asked if Eve had breasts and I told him she was too young and that older girls developed them.  He said that when Eve gets older she won't need her wheelchair and will walk.  I told him that wasn't going to happen.  I told him that Eve will never walk and that she will probably not get much older before she dies. He burst into tears and said he didn't want her to die.  He was super emotional and just sobbed.  He walked over to her and hugged her.  I started crying, too.  We talked about her disease and I told him that it will end her pain and that she won't suffer anymore.  It took him some time to calm down, but then like a typical three year old, he shifted focus to some music and started dancing. 

I met with both the hospice nurse and a reverend from hospice yesterday.  The reverend gave me a book for kids about losing a loved one.  We've never talked about Eve's terminal illness with Seamus, but have never hid it from him. He's always accepted Eve for how she is.  Looks like it's clearly time to read the book with him.  Who knows how long we have left with Eve.  Maybe a year.  Maybe less.  The nurse mentioned there's been a lot of progression in the last year.  I've noticed her wanting to lay down more and having more irregular breathing (2 deep breaths and 8 second pauses).  As sad as this experience with Seamus was, it was so wonderful to see how much he loves Eve.